Snowy Snowy Night

It was another long day here as splitting our time between work, the hospital, and a small bit of time home grabbing a quick shower, let Gus outside and a few hours of sleep has made us burn the candle at both ends.

The weekend seemed to bring with it some welcome news to possibly getting a handle on my daughter’s illness and a course of action to bring her onto the road back to being healthy. The early part of this week she looked like she was feeling better and looked like a major positive change in her color, her outlook and just seemed to be feeling better but things took another turn yesterday and it now feels like we are doing some sick dance with two steps forward and five steps back. Its tiring trying to keep all of the balls in the air right now but it must be done so we move forward.

The thing everyone now seems to admit (reluctantly) is they are now real sure what is wrong with her and they are looking to possibly farm her out (Medivac) to the Mayo Clinic in Minnesota where they have some experience in dealing with her POTS illness which is secondary to her main problem. Now I do not know if it is a Sourdough kind of clinic to go with the Mayo but at this point anything or anyone who might have seen this would be welcome.

The next few days will see if another flight south is in the future.

Tonight she woke up after having a pretty rough day but felt pretty good considering she had been throwing up all morning and early afternoon. She had showered and wanted to walk a bit so after her nurse had given her the different meds and did another finger poke for her insulin levels we unplugged her three infusion machines and headed out for a walkabout within the hospital. She wanted to go down to the first floor by the emergency room for a newspaper and after we made it downstairs I noticed she was looking a bit out of sorts.

She realized as we walked that her meds were kicking in and she was fading fast so we headed back up to her room where she could lie back down again. It was comical trying to decide if we needed to call the nurse or get a wheelchair to bring her back upstairs dragging her IV pole with us.

Her window overlooks the heliport so we watched several flights leave the hospital in the light snowfall to head out and pick up someone. It was another reminder to us that we may not have it so bad and the inconvenience we are going through is just another part of our lives to deal with.

I left the hospital a little while ago after she fell asleep and as I walked out of the hospital it was continuing to snow. The quiet was only broken by the faint sounds of a couple of vehicles driving through the UAA Campus where Providence Hospital is located. As I turned out of the campus there were several moose standing next to the road having a late night snack on trees.

I drove out and turned towards home by the Native Hospital and there was an older couple walking arm in arm in the quietness of the night under the golden glow from the street lights above. It was nice seeing them all bundled up for the cold (11 degrees) just enjoying a walk in the snow.

I saw several more moose on the way home so it lifted my spirits as the crunching sound of the tires on the icy streets drown out the thoughts in my head. It was relaxing and soothing making my way through the darkness and the fluffy snowflakes being reflected in the headlights.

I hope for a restful nights sleep.

Ice